Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany

Abstract

Making routine clinical-care-data available for medical research requires adequate consent to legitimize use and exchange. While, public interest in supporting medical research is increasing, individuals often find it difficult to actively enable researchers to access their data. In addition to broad consent, the idea of (consent-free) data donation has been brought into play as another way to legitimize secondary research use of medial data. However, flanking the implementation of broad consent policies or data donation, the attitude of patients, and the general public toward different aspects of these approaches needs to be assessed. We conducted two empirical studies to this end among Dutch patients (n = 7430) and representative German citizens (n = 1006). Wide acceptance of broad consent was observed among Dutch patients (92.3%), corroborating previous findings among German patients (93.0%). Moreover, 28.8% of the Dutch patients generally approved secondary data-use for non-academic research, 42.3% would make their decision dependent upon the type of institution in question. In the German survey addressing the general population, 78.8% approved data donation without explicit consent as an alternative model of legitimization, the majority of those who approved (96.7%) would allow donated data to be used by universities and public research institutions. This willingness to support contrasted sharply with the fact that only 16.6% would allow access to the data by industry. Our findings thus not only add empirical evidence to the debate about broad consent and data donation, but also suggest that widespread public discussion and education about the role of industry in medical research is necessary in that context.

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Fig. 1: Attitude of Dutch patients toward secondary use of medical data for purposes other than academic research (n = 7430).
Fig. 2: Attitude in the German population toward data donation from digital health records.
Fig. 3: Possible beneficiaries of data donation for medical research.

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Acknowledgements

The authors gratefully acknowledge the invaluable support by all academic and non-academic staff of the CCIM, University Hospital Schleswig-Holstein Campus Kiel, and of the Patiëntenfederatie Nederland. Special thanks are due to all survey participants.

Funding

TMF e.V. is funded by the German Federal Ministry of Education and Research (funding reference number 01ZZ1805).

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Correspondence to Gesine Richter.

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Richter, G., Borzikowsky, C., Lesch, W. et al. Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany. Eur J Hum Genet (2020). https://doi.org/10.1038/s41431-020-00735-3

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